Adventures with Hodgkin's

I couldn't have said it better myself. Hollywood and Cancer!

(If it's not there--hang on. Technical difficulties.)

My doctor visit went well; my SED rate is back to normal. My regular oncologist saw me, and she said that the oncologist I saw last time specializes in sarcomas, so an elevated SED rate among her patients is bad news. Besides, she said, I can always have a transplant--"we have that in our back pocket" as a treatment option. So go home, enjoy yourself, she exhorted. Somehow, I'm not as comforted by that thought as she is. Either way, I'm up for another PET scan in December, which would fit right in my regular cancer schedule. I mean, what would January be for me without cancer treatment?

I'm fairly confident in my new-found declaration of health, although there's always something I can find to worry about. Like physical exams. I'm just not getting the same number and level of them. The last time I had a real armpit dig to feel all those lymph nodes was at the appointment before this one.

In the oncology office there are racks of booklets for every kind of cancer, all different colors, entitled "What You Need To Know About X Cancer". The booklets are 20-30 pages of background material on cancer in general, the specific cancer, and treatments. It is most certainly NOT what you need to know--that booklet would be a little note your future self wrote for your present-day self that went something like this:
"You're going to live, but treatment sucks--you will feel like you're hung over for a long time. Pay attention when they go over the side effects, and take your medications--even for the little things. And you're going to lose weight, so it's not all bad."

Kevin was sick this week, a cold/flu kind of thing. He described it as having a bulldozer-sized head with sniffling, sneezing, general unhappiness. I wasn't nurturing or sympathetic, and I'm not sure why. (Although I did bring him chicken soup.) It's not because I didn't think his illness merited any attention--he was definitely suffering. Even Conor thought his head was going to explode with all that sneezing. It's not like illness is a competition. My attitude was, yes, you're sick, let me know when you're better. Did I not want to deal with it because it reminded me of how crappy it feels to feel like crap? Or because I'm afraid to think about being sick in general?

I've got a doctor's appointment coming up, and I'm dreading it. So I'm psyching myself out--am I dreading it just because, or am I dreading it because that mind/body connection is letting my subconscious know that something is wrong?

My mental limitations are taking their toll. (I did forget to mention memory problems in my latest diatribe on side effects, didn't I?) I cannot remember things, not-so-important short-term kinds of things, to save my life. For example, we went to Yosemite and instead of remembering what I'd packed for Conor, I had to keep digging through his suitcase. And I'll lose things, just like a senile person, if I don't put them back in the same place every time. And I need to concentrate on putting them back, too, or I'll end up with the cut-off top of the salad bag in the drawer and the scissors in the trash like last week. Kevin witnessed this one to his great amusement.

So I've lost my diamond earrings, the ones Kevin gave me for my 30th birthday. I wear them a lot, but always put them in my jewelry case. I must have taken them off somewhere else (probably downstairs, thinking it was too far to go upstairs, maybe when we were headed to the pool?) and then put them somewhere safe. 'Safe' is probably some random location I knew no one else would figure out.

I should explain that this isn't totally unlike me, that I have done similar things, but I've always been able to figure out where these things went. Eventually, but there's been some sort of recognition or trigger of what happened. Now, I have no earthly idea why I even took them off.

The other, related, mental disability is the inability to deal with a change in an automatic action. Again, this isn't totally unlike me, I had a pair of pants that hooked and buttoned twice and I forever left the fly open because I was programmed to do a maximum of three things to get my pants fastened. But now it seems to be worse. If I'm using the bathroom and decide to wash my face, I will leave the toilet unflushed. A break in the routine renders me unable to complete the first task successfully.

I have had, of course, a few people say that it is not the cancer treatment but my age that's causing these problems. And if I could remember how old I am, perhaps I'd believe them.

We're doing some financial planning now that I'm not working, and one of the things we need to do is update our wills. Not such an abstract issue anymore.

I also got a bill from the hospital for services provided on 12/21/2001. Yes, eighteen months old. There apparently is no statute of limitations on squeezing money out of patients.

I heard a story today on the radio on two 9/11 survivors. One who'd been taking her 3 month old son to the Pentagon day care on her first day back from maternity leave, and another woman who'd been working in the World Trade Center. The woman from the World Trade Center had gotten out in time, but was having trouble now dealing with her survivor's guilt. The other woman and her son have had to go through several surgeries and while it looks like he's fine, she is still having physical problems. The interviewer asked both how they were managing, and the WTC survivor was not very optimistic, but he Pentagon survivor was very short and succinct, "We are alive." So this solidifies my belief that once you accept the fact that you could die, or there could be worse fates*, then you're better able to handle the fallout from a situation.

*This must be why people are always telling you, "Things could be worse." I never thought I'd hear that from people when I got cancer, but I did, incessantly, since I had the "good" kind of cancer. But once you figure out that things really could be worse, that the alternative is NOT something you want, you can even deal graciously with comments like that.

Now that Conor's started preschool, I'm meeting a number of other moms, especially the parents of the other kids in his class. Some are not at all shy about asking when we're having another because this seems to be the time when we should have had our second. I mean, we were planning on it and I decided to have the rib thing checked out before I got pregnant and viola, here we are. Anyway, before Conor started school the only people who asked me this were people I knew fairly well or people I didn't know at all. If I knew them it was easy to answer because they knew the situation, and if I didn't it was easy to be noncommittal to someone we met in the park. I don't know why I can't do that now, other than the fact that I capitalized on my cancer to get into this school in the first place. I guess I think everyone knows, so I should be open about it. After blurting out the whole story to one mom I had coffee with, I had to figure out my approach. If someone asks, I just say yes. If they ask when, I'll say I'm not sure. If that doesn't stop them, then either they are really interested (or really nosy) so I'll drop the whole thing on them.

Well, there's good news. One of my more troublesome side effects is abating. I am making saliva again. Not at pre-radiation levels, but more. Having constant dry-mouth while drinking enough water to require peeing every 30 minutes is an exercise in confusing bodily signals. Mouth: hey, we're dry in here, you must be thirsty! Bladder: Nooooooooooooo!

I didn't go completely dry. That would have really been bad. It's bad enough with limited function--the dentist sees dollar signs. Without a continuous saliva bath, your teeth require a lot more attention. You really can't get away with flossing the week before a dental appointment anymore.

Speaking was a pain. It's hard to keep talking when you have no saliva, although a New Yorker article mentioned who has no salivary function, but spoke for over an hour and a half without a sip of anything. Maybe he rinsed his mouth with some high-tech silicon lubricant or something. Or maybe he's just used to it. Then there's the total paranoia about bad breath.

Eating was another fun time. Saliva plays a rather important role in eating--it's what makes food taste like something and what gets the food down your throat. Soup or cereal were easy and, oddly enough, potato chips and chocolate were tastier. Bread, a personal favorite binge food, was particularly difficult. Red wines, especially those 'robust' kinds like cabernet sauvignon, were actually painful to drink.

The doctors had no idea why it happened since there are different salivary glands above and below the jaw line and I didn't get those above the jaw line radiated (or that was the plan anyway). They just said that it usually takes a month or two for these kinds of things to resolve themselves, or it could take a year to get back to normal. The nervy/tingly feeling when I bend my neck is also abating, and now I'm just left with no armpit hair and limited armpit sweating. I'd be quite happy if those two never resolved themselves!

I have short hair again, and I'm not all that thrilled about it. I went in for a trim; to get the new growth on the back of my head blended into the rest. My hairdresser blames it on the painkillers he was on for a root canal, but it came out wrong, especially in the one area I went in complaining about. When I went back to get it fixed he was very apologetic and the fixing meant cutting it short. I've got a picture of Kevin and I from when we first started dating, and it's that short again. Sigh.

I shouldn't be so upset about the hair--I mean, I've had worse!

Conor started preschool this week. It's more like a real school than a day care situation; his school has preschool through 8th grade. It's been an interesting experience getting his things together, writing his name on everything, and then, of course, getting him there. The first day he cried when we left (I think every child was crying). When I came to pick him up, I asked if he'd cried all day. No, one of the teacher's said, he stopped crying by lunchtime.

I know a lot of moms were upset because it was the start of school and meant (crying excepted) that they weren't babies anymore. I'm excited about him hitting these milestones because it means that if I die, he may actually remember me. Morbid, I know, but I can't help thinking that way.